Day 1,996: Leap Day

Four years ago, I did not know if I would make it to see another Leap Day. Back then, my greatest goal was to make it to 40. I've made it. I can think about other things now, to some extent. And so I wrote a little poem about Leap Day. Or maybe it's about Julius Caesar, or Shakespeare, or how we think about history and literature. Regardless, it's different than anything I would have written when death seemed right around the corner.

See you in four. Right? Here we are four years ago, and here we are today. Things change and they don't.





Before the Leap
by Katy Jacob

I can imagine Caeser sitting in Rome before it was ancient,
kissing a woman before Cleopatra,
talking to Brutus before he knew they were at fault,
going, and looking, before he conquered and rephrased it,
believing what he wished before he knew what it was,
planning his speech before crossing the Rhine,
contemplating the die before it was cast,
carrying out the evil that men do,
suffering seizures before epilepsy existed,
living with grief before one child killed the other,
laughing with friends and countrymen before Shakespeare was born,
inventing time before anyone told him otherwise,
giving himself an extra day a little ways before the Ides of March
just in case he might be here in four years to remember it
and also just in case he would not,
before his necessary end came when it came.

Day 1,981: 50 Words or Less

On a whim, back in 2001 (or was it late 2000?), I answered a personal ad in the Chicago-based newspaper The Reader. This was before social media (unless you count Friendster or MySpace, and I'm pretty sure no one does), and, in many ways, it was before anyone of my generation knew that it was possible to have a virtual life or a virtual relationship. We did not yet know that it was possible to lie, or reinvent ourselves, because the goal of meeting through an avenue such as the newspaper was to meet people you might otherwise not meet--in real life. Any misrepresentation or subterfuge would soon be found out, because after maybe one virtual exchange, you would either meet in person, or you would not.

I had dated the same person from 17-24 and had been single a little over a year; well, not single really, at least not the whole time. I was working full time and in grad school full time. I didn't really go to bars, and if I did, I didn't want to talk to the men who wanted to talk to me. I would have never just gone home with anyone anyway--I didn't trust people, never have really, and I never wanted to be a part of anyone's over-inflated ego or story to tell his friends. I didn't want to date anyone I knew through work or school. I read the Reader on the el ride to work every week, and loved the "missed connections" best of all. I think I was drawn to the classifieds because of my love for Chicago. There were so many people out there I would never meet, never run into, never know, living in every corner of my flawed and complicated city. I loved the romance of the people searching for romance more than I cared about finding any myself. I wanted to answer an ad in a newspaper because I didn't know anyone who had ever done it. It seemed...interesting at the time.

I answered ads written by a SAM and a SLM, both in their mid-20s, and waited to see what would happen. My friends thought I had gone crazy. This was so out of character! These guys were bound to be stalkers, or rapists, or married! Where will you meet them? What will you do?

Remember when people hadn't yet met on the Internet?

It was like that.

I soon learned how the process worked. You could write 50 words about yourself for free. Any more than that and you had to pay a set fee per line. You did not have to pay to peruse other people's ads. However, you did have to pay to answer one. Reader-based email addresses and voicemail boxes (can you imagine!) were set up for the person placing the ad. To respond, either by email or phone, you paid a flat fee. I believe you paid the fee for x number of responses--it was not a monthly fee. I paid my money and sent an email to these two men I had never met, had never seen a picture of, had never held a conversation with, and I waited.

I didn't have to wait long.

In 2000 or 2001, there were too many men, not enough women, attempting to meet in this "blind date" fashion. A woman purporting to be in her 20s was likely to get a quick response. We set up dates. I met SAM first, and we actually went on several dates. SLM and I only met once. The details aren't relevant. What was fascinating to me is that these guys were exactly what they claimed to be: they were young, attractive, employed in interesting jobs, smart, and easy to talk to. They hailed from Back of the Yards and Chinatown but were both living on the north side. I never would have met either of them in the everyday travails of my life. Neither of them balked at meeting me for lunch or a drink after work, at me getting myself there and taking the el home alone, at the fact that I told them I had told a friend where I was meeting them and when. Nothing came of it, with either of them, but it was fun to meet people this way; and oddly, it seemed safer than most alternatives.

I decided to place my own ad.

They told me I had 50 words for free. Well. I'm a writer. I gave them exactly 50. Five Zero. I didn't say a single word about what I looked like. I remember that I gave an age preference (24-34; I was 25) but no race preference, though I did describe myself as SWF, as I did not want to date someone who would not want to date me if I was white, as there are some things that can't change, and that's one of them. I did not give a height or weight preference. I cannot believe that I did not save the ad that I wrote about myself. It was, as anyone who read it at the time told me, perfect. It was not just well done--it was actually ME. I was proud of it, and didn't really care if anyone responded to it or not--I was just happy I had written it.

I received 45 responses in the first 24 hours.

I was completely overwhelmed and did not have time for that; hell, I didn't even have time to read the responses or listen to the awkward voice messages. I enlisted a friend to help me separate the wheat from the chaff. I began to make decisions about who to meet based on the arbitrary nature of how they decided to write about themselves in an email addressed to a total stranger. I made judgments on things such as "pretentious tone" or the existence of typos. I summarily dismissed anyone who described himself as hot or muscular. Somehow it was obvious in just a few words if guys were douchebags or only wanted sex. I'm telling you, folks didn't know how to lie.

I met a few people whom I dated for fairly significant periods of time--months at least--through this medium of newspaper ads.

Most people reading this know that I met my husband online. Today is valentine's day, and it seems possible that I am writing this to talk about the nature of love, to say something about fate. But that is not where I was going when I began writing this meandering post.

How would you describe yourself if you only had 50 words? Today, there are twitter profiles, any number of different workshops or examples out there to help you describe yourself in a witty way on social media. People are savvy today, they know how to do this. They know what sounds good. Everyone knows how to describe themselves in 50 words. But they have thousands of pictures to augment the passage, snippets of wit to accompany them in 140 characters or in status updates, ways to make it SEEM like they are being concise, when in fact they are laying everything on the table and keeping nothing to the imagination.

But fifteen years ago, we didn't know how to do that. We had to think about words differently. Outside of biographies for work, there was little to no reason to describe yourself in short passages. I think about how I have described myself in the intro to this blog: "There is much to say here, but also little. I'm a proud Chicagoan, a professional nerd, a mom of two and a wife to one. Given "spare time," I like to be by myself. Doesn't everyone? I spend a decent amount of time hoping to make it to 40." That's 49 words. It's fairly accurate. But that doesn't work for me, not anymore. How can you REALLY describe yourself in 50 words or less, in a way that matters? I've come close a few times in this blog. I don't know that I've ever come closer than this though, this passage that I wrote when KatyDidCancer turned 1,000 days old, and I was musing about what writing this blog has meant to me. As I find myself increasingly unable to write, to think of anything that seems interesting enough to say, I go back to this, and the truth in it:

Over the last 37 years, I have lived two lives: as Katy the person, and Katy the body. Katy the body that other people have wanted, other people have hurt, other people have loved, Katy the body that didn't always work, that so often had to fight, that was always separate from Katy the person. And people who think they know me well can say that the relationship between the two Katys is what makes me who I am, and they will be mostly right. But the body will be taken away, and the person will change.

But this?

No one can take this away from me.

I've come close to describing love, too. I seem to have been searching for ways to do that. It's this word limit that intrigues me. I am wordy, my thoughts are circuitous. If I were to try to sell some version of myself today in 50 words or less, what would I say? If I were to describe the nature of love in 50 words, what would it sound like?

Maybe things aren't so different now than ten, fifteen years ago. Maybe we have always known how to cut to the chase when it mattered. Thirteen years ago, a guy wrote me an email:

"So. What's it like to work for a think tank?"

And I guess I responded, didn't I?

"Let me spend the rest of my life telling you."

Happy Valentine's Day.

Day 1,960: Restless

It’s the aloneness that I love. This, this silence, it is everything and nothing at once. I feel guilty that I don't feel guilty about it. I should hate being alone, or fear it. It's as if I've learned nothing over the last five years. But it is only when I am alone that I can allow myself to be what I am: restless. I get so restless during the day, when no one is around. I’ve been so restless all my life.

That word, restless, has always been used to describe me. On the face of it, it seems to mean not having rest, but of course when people turn to you and ask, why are you so restless? that is not what they mean at all. They mean, why can’t you sit still? Why are you always moving, pacing, shaking, getting up from the table, running, causing trouble? I remember as a kid, being so restless I could not stand it, or maybe I was fine with it, but other people couldn’t stand it. I was a girl, which is usually 75% of the problem. Sometimes people questioned how someone could spend all her time without both feet ever touching the ground at the same time. I should have calmed down over the years, but instead the restlessness increased. It’s now at fever pitch.

When I was still little, I began to feel confined in the most open spaces. I walked into a room and immediately thought of how long it would take to escape. I could work through the largest crowds seamlessly, almost unnoticed. I could make myself disappear. If there was ever a fire, or a shooting, I don’t question whether I could get out if I survived the initial onslaught, because I’ve known all the ways out of every place I’ve ever been by the time I was in high school.

High school. Senior year, my restlessness knew no bounds. I would sit at my desk and watch other students talking. I would stare at people who were occupied with the stuff of their lives, with dating and sex and the lack thereof and music and test scores and basketball. And of course none of it mattered, because of suffering and death and the terrible things people did to each other and every last person’s inability to escape any of it. But if I had said anything about what he was really thinking, there would be talk of depression or angst or, worse, therapy. I could not stand the idea of therapy, which wouldn’t have helped because the things I couldn’t escape in my mind were real things, not the stuff of narcissistic youth. And so I would shake, I would actually shake—both legs, my hands, and then, sometimes, I would leave.

That last year, if I got too restless in class, I simply wouldn’t go to the next one. I knew how to escape and somehow I knew how to avoid meaningful consequences even when I got caught, or maybe I just didn’t care, and the one person who could have punished me chose not to, saving me when I did not know how to save myself. My lack of excuse for ditching was shocking, a real failure of the imagination. I could have said I was drinking, getting high, fooling around with boys. That type of trouble would be accepted, and dealt with, and everyone could feel that the universe made sense again. I could never tell anyone that I would just leave school and walk in the rain smoking cigarettes I had stolen from my boss, alone. It was a strange rebellion, and one not to be trusted.

I never was good at vice. I never did it the right way.

But at least back then, that was when there was something to rebel against, even if it was just the notion of what others thought of my life. Now I am still restless, with nothing to show for it, nowhere to bring my ever-moving body. I go to the gym, I pace, I walk for miles, I can’t think of anything to write or, sometimes when I am around other people for a change, to say. I’m restless, even in my dreams. I’ve been this way for as long as I can remember. You’d think I would have taught myself something by now, that I would have talked myself out of it.

And I have, I suppose. But I was too restless to listen. Always moving, always standing still.

Day 1,930: The Sixth Christmas

Last night, we put our restless children to sleep, barely two days after our daughter asked us to tell her the truth about Santa Claus, because she would need to know when she was older. Some people believe it is wrong to tell children stories that supposedly aren't true, or at least people sometimes feel that way about certain types of stories, and not others. I figure that I am, and have been, the age that she refers to: I am 40, and I have been 30, and even 15, and Santa came to me then as well. And so I told her that she knew the truth already, and that Santa would come again. She believed me, because she wants to believe, not just me, but everything. And so last night we put them to bed after telling them that we had been together, as a couple, for 13 Christmases, that Lenny was experiencing her 10th Christmas, and Augie his 7th. Augie had been constantly moving for not just hours but seemingly days, driving us all crazy, but seemed eager to go to sleep. Lenny could not fall asleep, and came into our room at about 10:30, crying that she would never sleep, and then Santa would never come.



Her father carried her back to bed like she was a baby. She is almost ten years old, and she weighs 50 pounds. People talk about how it won't be long until you won't be able to do that. But I probably weighed 90 pounds when I learned how to drive. When Gabe and I started dating, he used to carry me places. It was like something out of movie, when people proposed illogical and intimate things to each other. Gabe would ask, Can I carry you? And I would say, um, why? There was never a reason. He would carry me to the car, or the door of my apartment, or up the stairs. He still offers, albeit rarely. Most of the time, I am busy doing something else.

And so they slept, and they awoke, and we had Christmas morning. I remember some things about their previous Christmases, but the memories are already a blur. When Lenny was nine months old she got a doll for Christmas that she named Dolly, because even then, she could talk, to a point. Her daycare providers told us they had never seen a child so young so attached to anything before--she treated her as if she were a real baby. One night, when she was one, Lenny woke up sobbing, inconsolable. She tried to say what was wrong but couldn't--she was one, after all, and she was so upset she couldn't speak. We finally realized she had left Dolly at daycare, and was crying the way a mother might cry when she cannot find her child in the grocery store. We told her that Dolly was fine and eventually she went back to sleep. At six AM, Gabe rode his bike to the daycare and rescued Dolly so she was there before Lenny woke up. It's not so much Lenny receiving Dolly during the Christmas of 2006 that I remember, as it is the time when she forgot her. That is what I remember.



I don't remember Augie's Christmas when he was one. How terrible is that? It's true. I was two weeks out of eight continuous months of cancer surgery and treatment. I just don't remember. Two years ago, I was six days past an emergency D&C necessitated by almost two weeks of very excessive bleeding caused by chemo destroying my hormones. I don't remember the specifics of that Christmas, or of last year, when I was healthy, as I am today. What I do remember of Augie and Christmas is the way he has spun it for all of us, as he dances constantly and explains that Santa is able to deliver all the presents because he uses his magic to stop time. I will remember him writing "P.S. Don't forget the stockings!" on the note to Santa this year. I don't know that there are any specific "aha!" moments of him, or his sister, exuberant under the tree, that I will remember, however. I only remember two of my own: when my brother gave me his Bad News Bears stuffed animal that I loved, and I kissed him, and he let me. And when I received my knockoff Cabbage Patch doll, whom I named Sarah, and declared to my mother was six years old, because I didn't like baby dolls and I wanted to be able to go to work. It's not that I remember opening those presents, necessarily. Or that I remember what happened next. What I remember are the stories, because I have heard them so many times.



Christmas blurs together for me. It is all anticipation, and chaos, and me cooking the same dishes for breakfast every year. It is reading our new books after everyone leaves. Christmas is me taking a bath and taking a walk and not seeing the kids for the rest of the day because they are in the attic with their new toys. Christmas Eve is dinner at my mother's house, and everyone reading a Christmas magazine when the meal is over. Christmas is decorating and shopping and wrapping and baking and planning. Christmas is much more fun as an adult, watching through the eyes of a child. I have had 40 Christmases to learn that.

I have had thirteen of those with my husband, ten with my daughter, seven with my son. I have had six Christmases since I knew I might not have many more. This one falls on a full moon, the first full moon Christmas of my memory. Perhaps someday, that is what I will remember of this Christmas, just as I remembered nothing of the others but a doll and a line from a note on a piece of construction paper: In the year 2015, we were all quiet and calm the evening of the sixth Christmas after, and there was a full moon, which there had never been on Christmas as long as your father and I could remember. And while you played and read, I wrote about it, because I could. Because I was there.

And they will remember, won't they? Of all the blurred memories they have of Christmas, they will have at least ten and seven that include me. And that is something we could not have known in 2010, or in 2013. Merry Christmas, everyone. I wish you all the chance to remember.

Day 1,918: Christmas Tree Story

The world is too much with me. I haven't been able to justify saying anything here about anything. I also know that it is not a concern of anyone but me if I write here or not. I know that is probably the wrong attitude. Luckily, there is now definitive and fairly exhaustive proof that my attitude won't kill me or heal me one way or another, just like I never thought it would. Everything I can think of to write is a diatribe, and it doesn't seem like the world needs any more of those.

So maybe I should just write stories, so my kids can read them someday.

I thought this time I would write a Christmas Tree Story.

When I was 18 years old, we had the last Christmas in the house I grew up in. My parents had been separated for years but were not yet officially divorced; that happened several months later, and was quite a relief. I was a freshman in college and my brother was a senior in college, and it was the last time we would call Chicago "home" at the same time, given that we both lived in Minnesota, and once my brother moved out of Chicago, he never moved back. I am here and I am not, half the time wondering how the hell I can stay, the other half wondering how the hell I can leave, all the time frustrated by my allegiance to the idea of a place that doesn't show any allegiance to anyone.

But that year, 22 years ago, we had one more season in that house, and my brother and probably my mother felt sentimental. I don't remember feeling that way. And I do not mean I don't remember feeling that way that December. I don't remember ever feeling that way at all. Regardless, once we arrived off our respective Greyhound buses, we settled into our winter breaks. My boyfriend lived in Chicago and we looked at the six weeks we would have together as if they were years. Christmas seemed magical, if only because I had been able to get away from the life I thought I was stuck in; four months into my college career and it still surprised me that I had done that.

My little family went to get a Christmas tree a week or so before Christmas. I cannot tell you where we went. Every year of my life for almost two decades we picked out a tree from the same place and I don't know where it was or why we went there. It was always cold when we picked out the tree. We were partial to the eccentric trees, not too round, something with a little personality. We found one with little to no infighting for a change and they wrapped it for us in that plastic that I'm sure is never used anymore and had no real purpose even then.

On the drive home, we heard a strange sound on the top of our car. Something was squeaking; the tree must have been rubbing against something on the car. We pulled over, but still couldn't figure it out. Once we got home, we carried the tree to the porch so it could "set." What did that mean? Did trees need time to get used to the idea of being inside houses? I can't remember.

Once we deemed the tree worthy of coming inside, my mother made the discovery.

The sound we had heard on the car was a bird trapped by the plastic, dying a slow death inside our Christmas tree.

My brother took most of it out with a gloved hand. He vacuumed out what was left. That was the last time my family had a live Christmas tree.

A few months later, my mother moved to a small apartment. She bought a small fake tree to go with it. Though she lived in that apartment for a decade, she gave me that tree three years later when I moved into my first apartment by myself--no roommates, no boyfriend, just me. I took a second job as the manager of the building so I could afford it; I made about $20k a year working an a nonprofit at the time. Even then, that was a low salary. I remember those years in my own apartment, and later my own condo, which I bought when I was 25, with a fondness bordering on reverence. It is the dream of a loner to live alone. I could not give that up, not until I met my husband, and even then, I was wary. After seven months of dating he told me he thought it would make sense for us to live together--wouldn't that be fun? I wasn't buying it. I told him I didn't need his help with the mortgage, all the furniture was mine, the place wasn't that big--I didn't want to give up my independence just to live with someone. It would only make sense if I was going to do something permanent like get married. He said right! That's what I mean. Maybe we should get married.

And because society has conventions, I didn't know how to live alone and do that, so he moved in just before Christmas and we shared the holiday together under that tree as the beginning of the new family we didn't yet know we would have.

In that apartment I loved, in that condo, in our first house that we bought just weeks before we married, which we finally sold just weeks ago after 11 years, in this house with its sprawling common spaces and windows in illogical places, I have kept that little tree. There are ornaments from my childhood, some of which I made. Our kids' crafts are represented. There are ornaments decades old, nothing matches, the blue and silver garland is falling apart and isn't big enough even for this tree, and the lights are a different color than the star. My husband's Christmases are a mix of his mother refusing to celebrate and threatening to end her life each year and his grandparents in the Chicago suburbs welcoming him from California and insisting that the tree remain standing until his grandfather's birthday on January 10. Gabe's grandfather died a year or so before we met and he has been saddened by the fact that I never knew him from the very beginning. We have no ornaments from Gabe's childhood, but we put the tree up the day after Thanksgiving and leave it up until January 10 to this day, even though I can't stand it, because not being able to stand something isn't relevant in the scheme of things.

I started hosting Christmas at my place when I was 23 and unmarried without children and I still do. We throw way too many presents around that tiny tree. We leave cookies under that tree, and carrots for the reindeer, and cheese for Santa Mouse. We always get a thank you and a homily of sorts in return. I keep a bread machine in my basement just so I can make chocolate bread once a year for Christmas morning. I live in a neighborhood where some families have to rent out banquet halls just to fit the immediate siblings and cousins. A large Christmas at our house has nine people. I've hosted Christmas once when I was bald and two weeks out of cancer treatment--that was the year that Gabe's grandmother died just weeks shy of the holiday; two years ago I hosted while I was in the middle of chemo and 6 days out of having an emergency D&C due to extreme bleeding brought on by the poison. We've had pregnant Christmases and Christmases with babies. I've exchanged presents under that tree with boyfriends until I didn't have those anymore. We have maybe just this last Christmas left with our daughter playing along and fully "believing" in Santa, though she told us years ago that she didn't believe in Santa when she was 5, as she just figured it was someone in the family who hid presents after everyone went to sleep, until she realized that was crazy, because who wants to stay up past midnight? And she continues to talk to me about the sound of hoofs on the roof and how hard it is to stay awake even though you try with everything you have.

This is just a story of how we found our Christmas tree. I know we could start over again every year with a fresh one, or at least get one that is bigger or more impressive. But it's been 22 years and I think we are stuck. It fits, don't you think? Some people have Christmas trees. We have dead birds and actual spilled guts and families broken apart and terrible illness and new lives emerging and falling in love and being alone and being together and generally a mismash of everything.

I guess we'll keep it.

Day 1,891: Headlines

This is the longest I've ever gone without writing here: 26 days. I have been living in a constant state of ennui, which is much more accurate than saying anything about "writer's block." I started writing a novel, a lifelong goal of mine, and got about 15 pages in, and then I stopped that too. I will go back to it--I have promised myself that much. But I have been feeling ambivalent about much more than just writing. Perhaps everything that's happened over the last five and a half years, or the last 40, is catching up to me. I feel vaguely depressed, the opposite of the anxiety that led me to be so active and productive during treatment. I feel isolated in myself and disinterested in general. We have had some fairly stressful times over here over the last month or so for reasons I won't get into, and the reasons I won't get into that are what has led me to write today, after all this time.

People have suggested, in the past, that therapy is a good thing for people with cancer. I'm sure that's true. We thought it might help Augie when he was going through those horrible, crushing night terrors, but it didn't, not really. He liked the therapist and appreciated her general calm. He enjoyed playing with her and talking to her. But his night terrors did not end until my chemo ended. We all knew what was wrong with him and what it would take for him to be less angry: he needed his mother to not have cancer anymore. Of course, I could still have cancer, right now--we don't know. But in his four year old mind, my cancer left with chemo, and he began to sleep peacefully again, no longer fighting death in his dreams.

And so I haven't gone to therapy. And yet, I have, of course, gone to therapy--right here, in this blog. But I know what my problem is. I know what I need to say about it in order to process what is happening, and I would never say it out loud--that's why I write it. I am not denigrating the value of therapy. I am not in denial about the isolating and scary and sad effects of two cancer diagnoses in my thirties. One of my biggest issues has been feeling overwhelmed by all of the things I have to do in my life, as a full time mother and worker and general human being, all while very functionally handling the fact that I have had a very serious and aggressive disease that has shown its intention to stay with me, all while knowing that my power over its return is minimal and that if it decides to go rogue, I will die. So therapy has seemed like one more thing there is to do, and I have chosen to spend time doing other things that make me feel sane, such as work out and write.

But there's another reason I haven't gone to therapy, and it's something that's been true about the way I have seen the world all my life.

I just can't accept that my problems are very meaningful. They are, in one sense. I have written many times about my belief that suffering and grief are real, and that we should bear witness to them, no matter how they manifest.

And yet at the end of the day, it is impossible to deny the suffering and grief that exists in every corner of the world that so far eclipses everything I have experienced or will experience that it seems selfish to focus on how I feel.

I grew up in a house where feelings of self pity were met with comparisons to what Jews had suffered in the Holocaust. It's a long story why that was the case, and it is somewhat beside the point. Eventually I argued with this, when I was maybe 12, and said that I could both acknowledge the immense suffering of people throughout history and have legitimate emotions of my own. My mother heard me, and the comparisons stopped.

The thing is--those comparisons were true. Hearing them shaped me in a way I would never change.

I always think like this, about what people have suffered, about what the ultimate potential is for evil, and my own life is brought into perspective. What's hard now is admitting that I feel I've suffered at all, because it all seems so...pedestrian.

I've written, mostly in my other blog, about sexual abuse and harassment, though I haven't given details about the stories that really matter. I think these things are more important now that I am a parent--my responsibility for other people's lives makes me see my younger self differently. And so I begin to think these things matter, and then I read this:

human trafficking victim says she was raped 43,200 times.

I think about any type of physical suffering, about cancer or all the times I've cheated death, about any kind of pain or even the mortal fear of having the cold metal of a gun at my temple, and then I recognize

130 people killed in terrorist attacks in Paris

150 killed in terrorist attacks in Kenya

7 year old girl found dead in creek 25 minutes after being reported missing from high school football game

nine killed by shooter in church, racism was the motive

man disembowels fiancé with his own hands

mass grave found in Mexico, 60 bodies uncovered

9 year old killed on Chicago's south side was targeted, executed

the headlines that remind us of the refugee crises around the world, the extreme poverty, parents being forced to watch their children's murders, rape camps, bombings.

I am not saying that I find the reality of the world depressing, or that I feel paralyzed by it. What I am saying is that I find the reality of the world to be real. I find it difficult to focus on my own emotions, or to even feel my own emotions in a full way, and that is not to say that I am deadened or detached. I recognize the beauty in life every day, and that is what makes the headlines so astoundingly sad--that there are people who believe it is their right to make others suffer, to attempt to strip the beauty of anyone's individual world away from them. I refuse to sugarcoat the repulsive or attempt to find the positive or the meaning in senseless acts of selfishness that destroy people's lives.

Suffering is real and it is not deserved. Horror is not something that happens to other, lesser people. Death is not always dignified. Everything does not happen for a reason, or at least not a good one.

These statements are not depressing. Perhaps that is what I have been saying for all of these years. Some suffering and pain are just a part of life, but some can be, and should be, stopped. We cannot truly be empathetic if we believe that everything will turn out just fine, as if the world is filled with magic. The magic in the world is created by people who make decisions to make the world a magical place. The horror of the world is created in much the same way. When the magic is broken and horror seeps in, it is not our place to try to justify injustice in order to make ourselves and our chances seem more favorable. It is our place to bear witness, to recognize that the things that happen in the world and that people experience are real. It is our place to try to make sure that fewer horrible things happen. If we cannot realistically do that, we have to at least acknowledge that they have happened. We must recognize that the terrible things that happen could happen to any of us, that odds are just that. If your life has not been pulled out from under you, it is not because you deserved better.

I think about this all the time, about all of the people I am not, and the arbitrary nature of my luck. I do not think I deserve to have had this luck any more than anyone else, but I do hope to live my life in such a way to be worthy of it. I have not felt worthy of late. And so after a long time, I wrote this, because that is what I do. I do not do it because I think my words are important. I do it because words enable me to give power to context and perspective to life. We are all everything to some and nothing to most. Let us focus on the everything.

Day 1,865: ACS' Mammogram Guidelines

This post will be different than most that I write. I'm just providing an explanation and opinion on the new guidelines put forth by the American Cancer Society on mammogram screenings for women.

The short story is that ACS has raised the recommended age for first mammograms from 40 to 45 for women with average breast cancer risk (emphasis mine). At age 55, such women can move from annual mammograms to mammograms every two years. ACS has said that women aged 40-44 should be offered mammograms if they ask (I honestly do not understand how that would work with current insurance company rules).

A lot of people are up in arms about these new recommendations, especially women with breast cancer that was diagnosed prior to age 40. It is an understandable reaction.

I just don't agree with it.

Not that anyone asked me, but I agree with the ACS recommendations on mammograms (I don't agree with the recommendations for clinical breast exams--more on that later). Women with no family history or high risk for breast cancer have never been offered mammograms before age 40 as a matter of course. There are exceptions, of course. However, most of us who were diagnosed before age 40 found the cancer ourselves. We felt a lump or noticed a change in the skin or nipple or realized something was wrong. I found my cancer both times. I had a clean mammogram in May of 2013, and a little more than a month later I found the lump that would lead to my second diagnosis in July 2013. In fact, when the radiologist was attempting to confirm my cancer, she could not find the tumor using mammography--even though she had placed a metal clip inside my breast at the tumor site and was specifically looking for it.

There are a few lessons here that are not just me talking about my experience and expecting it to apply to other women.

One lesson is that ACS is absolutely NOT saying that women who find suspicious masses, confirmed by a doctor, will be denied mammograms if they are under age 40. The fact is that most mammograms offered to young women are done to confirm what is already suspected, not to diagnose cancer that was undetected. There are exceptions--I know that. For example, women who are BRCA positive would be considered exceptions, I would assume, as would women with strong family history of breast cancer. But the new guidelines are for women with NORMAL RISK of breast cancer. And no one is suggesting that mammography would not be used to diagnose women like me--I was a woman with no high risk of breast cancer for the first 34 years of her life. I was years away from my first scheduled mammogram. But when suspicions arose, I underwent a battery of tests, including mammography. ACS is not suggesting a different course of action.

Another lesson is that mammograms are simply poor screening tools for young women. They do not work well for us, and this is a big part of the reason for the change in policy. They do not work well for anyone with dense breast tissue. They carry risks and have high rates of false positives (or, in my case--false negatives). Ultrasound was much more effective for me, both times. I was not even offered a mammogram the first time, as I was still nursing and the radiation would prove harmful to the baby. Once the ultrasound showed three perfect round tumors, however, I did go into mammography. Hell, they gave me a little of everything: 3d mammogram, ultrasound, regular mammo...

Finally, women with high risk of breast cancer have entirely different recommendations. My daughter is considered high risk, because of me. The current recommendation is that she should begin to have mammograms when she is ten years younger than I was at diagnosis. So, most women will begin to have mammograms at age 45, and Lenny will have hers...at age 24. I hate that idea. I hate the years of radiation that my misfortune has given her. I hate the worry she will have at a young age, when she should just be enjoying her youth. I hate the idea of them finding anything that would lead to treatment before she has had a chance to have a family, enjoy her youthful sexuality, or just live her damn life like everyone else.

So the bottom line is: women at high risk of breast cancer are not going to be denied screening tools because of these recommendations. (For more on this, see the Young Survival Coalition's response to the ACS recommendations).

Barring information about genetics, family history, or suspicious masses, no one really knows who is high risk.

Moreover, these screening tools are not the best line of defense for young women. More work needs to be done in that area.

I admit that I do not understand why ACS would recommend the end of clinical breast exams. That doesn't make sense to me. Such exams are not high risk, do not expose anyone to radiation...I suppose they might not be objective or entirely accurate, but they seem a hell of a lot better than nothing for very little cost and risk. My gyne confirmed my lumps through a CBE and won't allow me out of his sight without extensive breast exams. My oncologist does them too.

I think the uproar over these changing guidelines reflects the general misunderstanding about the usefulness of mammograms. Mammograms are touted as "prevention," as the "early detection" that will save your life. Mammograms prevent nothing. They are DETECTION tools. They can only tell you, possibly, if you already have cancer. They cannot predict your risk or the course your existing cancer will take. There are a lot of ways to detect breast cancer--CBEs being a big one.

But there is no test that can prevent your cancer from moving from early stage to late stage, or from being there in the first place. Breast cancer organizations such as Komen are partially responsible for this misinformation. Their focus is so clearly on "early detection" that it ignores facts such as the 34% of women with early stage TNBC whose cancer will metastacize NO MATTER WHAT THEY DO. The dark underbelly of Pinktober and breast cancer awareness campaigns is that people have been led to believe that mammograms save women's lives--when they weren't even designed to save women's lives.

That's what surgery, chemo, radiation, immunotherapy, hormone-blocking targeted drugs, and other solutions do.

But I don't know why I expect this to be any different than any of the other misinformation out there, like that bilateral mastectomies will help save your life or that more aggressive cancers (such as HER2+ or TNBC) require mastectomy for efficacy (genetic factors, in addition to size and invasiveness of tumors, are what matter for such surgery decisions, not tumor type) or that putting a smile on your face will prolong your life or that avoiding stress will stop cancer in its tracks. I mean, I was once profiled in HuffPo for having a lumpectomy (as if that was weird or something) and comments on the article included things such as "if she really loved her children, she wouldn't have worried so much about her breasts."

SCIENCE, PEOPLE. Also--what an asshole. Someone actually said that I didn't love my children because I didn't needlessly amputate body parts and because I chose a surgery and treatement plan that GAVE ME THE LOWEST RISK OF RECURRENCE.

But I digress. Here's something to chew on. I have had an extremely aggressive form of breast cancer two different times. And yet, here I am, at age 40--back to screening (fewer pictures and angles) mammograms as opposed to diagnostics. I am being treated like a woman with average risk of cancer (from the old guidelines) and I am a two time cancer patient. I see my oncologist every six months. The man still does an extensive CBE (I assume--I don't see him until November) but no other tests. I get no bloodwork, no scans, no tumor marker tests--nothing. This has always been the case. The reason is that these tests are notoriously inaccurate and prone to false positives. As my oncologist says "if we look for something, we will find something, and then we have to treat you." I should note that my oncologist is one of the top breast oncs in the world, and he helps make the recommendations that are used for treatment at the national level--he is not a crackpot by any means. So, when my full body scan in 2013 showed nodules in my lungs, they did nothing. Because EVERYONE IN THE MIDWEST has nodules in their lungs from pollution. Barring other symptoms, there's nothing to do. He doesn't do these tests because the guidelines are against it, they cause needless worry and stress, and for this reason:

There's not a damn thing anyone can do to turn back the clock on metastatic breast cancer today.

This is not Lance Armstrong's stage 4 testicular cancer, folks. No one is getting cured. Once breast cancer has spread to a distant part of the body, no test or screening in the world will enable the person getting that news to ever not be a person with breast cancer--EVER--for the rest of her life.

That is the part that needs to change. Perhaps less of a focus on mammograms will free up resources to actually search for a cure.